This blog is my silo,
my storage of personal fodder for future harvesting.
A home for thoughts and ideas to ferment, grow and eventually ultimately ripen.

Monday, March 3, 2014

My Mother, Her Battle for Life and the Cyclical System of Health Care

My mother is 63 years young. My brother and I always
called her The Giving Tree. She is beautiful, stunning and more intellectually
brilliant then the vision off a cliff gleaming down on the ocean crashing
against bright silver rocks. She is talented, creative and nothing short of
incredible. Becky took her life by storm, raised two children on her own,
opened a company and quickly rose to be the leading female entrepreneur in this
country. She started the staff leasing business (which she named after her
children, Heatherton), posed on the covers of the fancy magazines, dined with
the politicians, shook hands with Oprah and did nothing but succeed
at everything that she touched.

My mom, Becky, made an easy decision in her youth
that her children would not have a childhood that even remotely resembled her
own. Becky, full of steam, chugged forward every day of my childhood no matter
how tired, sick, frustrated she felt. Mom worked around the clock, 14, 16, 18,
20, 22, 24 hour days if she had to… whatever she had to in order to make her
dreams come true. Her dreams were simple, 1. Her children would receive the
best education possible no matter what it cost. 2. Her children would have a
wonderful home to call their own. 3. Her children would become the kind of
people that would be giving, thoughtful and successful in the world. 4. Her
children would attend college and graduate. 5. Her children would be successful
on their own. Lastly, number 6, her children would be good people. She shed
every leaf off of every one of her branches, lost strength in her trunk, but
she would never, ever stop giving.

My brother and I are both adults now, me being the
eldest. We have successful lives, dreams, vision and we are always helping
people, and taking time to grow within ourselves. My mother’s success provided
her with her 6 dreams to come true, but not everyone got their wish.

I don't get it! I just don't get it. I am sick to my
stomach every single day and am plagued by the overwhelming frustration of it
all.

My mother has 2 rare blood diseases, had a bone
marrow transplant and has leukemia. She also has a lot of related graph versus
host issues from the bone marrow transplant and a host of other medical issues.

She cannot work, due to the medical issues.

Thus, she is dependent on the very small amount of
money that the state of Indiana perceives as just above the poverty line.

She cannot get affordable health care because of her
pre-existing conditions.

Thus, she is forced to have a spend-down, meaning
that she must first spend $1,500 of her own money before the insurance will
cover anything.

However, she does not receive enough money from the
state of Indiana to afford her spend-down.

She must take all 15 of her medications, or she will
die.

She cannot afford the $1,500 worth of medications.

She has to pay rent, for she has to live somewhere,
but she cannot afford to pay rent,
because she has to take the medications that keep her alive, that she
cannot afford, because she cannot have health care because she was struck down
by her own body, not by a crime that she committed.

She cannot breathe because the pain is so bad. When
she cannot breathe, she gets infections in her lungs and she gets sick. She can’t
go to the doctor because that is more money on top of the $1,500 for her medications
that she cannot afford so she spends days crawling across her bedroom floor
trying to reach the bathroom as she is aspirating on her own vomit, but she can’t
go to the doctor since she can’t have insurance because he body waged a war
that our country won’t help her fight.

My mother cannot walk, now, because the pain in her
legs is so fierce that she must rely on a walker. But, she cannot use the
walker because her hands have lost all strength and she is supposed to have
surgery on them, but that of course costs money that they health care won’t
afford her and the great state of Indiana surely will not care about.

Due to the pain, she is breathing so erratically
that she is back to being on oxygen all of the time, when she can get to it.
She falls a lot and she bleeds, and bruises. She has such extreme pain in her
legs that a phone call home is one that near breaks me in two and leaves me for
dead. She is panting, moaning, seething in pain. I cannot bare it. My heart
cannot manage her utter desperation and pain. She is my mother, she is my mom,
she is my mommy, she is the one that held me in her arms and promised to breathe
life into me at any moment that I may not be able to do so myself. She is my
mother.

My mother is suffering and there is no help? How is
there not a health care provider that will assist with this awful and torturous
situation? My mother is brilliant, kind, generous and would give you her last
breath if you needed it.

The health care system forces her to pay money that
she does not and cannot have. The state will not give her enough to live on and
to have the medical care that she requires. She will die without the medical
care and she will die trying to maintain having a place to live and the
medications to keep her alive.

She has turned to driving for a company, basically a
taxi service. She moans when she moves because the pain all over her body is so
excruciating. She must use the walker to even get to the car. She can barely
move her legs as much of her pain is centralized there. Remember, her hands
also have no strength. She must operate a stick shift car on the icy streets of
the storm ridden Indianapolis for no less than 4 hours a day, which means she
is driving for 8 hours a day.

I beg her and I plead her to stop driving in her
condition and in the condition of Indiana, she says that she must earn the
money. I beg her to talk to the doctors to appropriately treat her pain, the
pain medicine costs money, too. The doctors refuse to help her find a way where
she could possible afford the medications that they prescribe. She begs them to
wait to order the most expensive ones until the spend-down is over, but they
refuse, and she must find the $200 for one prescription that will last her 28
days.

The state of Indiana won’t give her more money, as
they already give her less than her spend-down. She has to pay the spend-down
every month in order to get the medications in order to live. So, while near cripple,
she is driving around in snow and ice storms trying to earn money to simply
stay on this planet and yet, there is no help? There is nothing that can be done?
There is not one avenue that my mother can utilize to help her out?

I spend my entire day with a knot in my stomach and
scared half to death. I am not ready to lose my mother to a car crash because
she continues to drive for this company because it is the only income that she
can have or else she won’t get her money from the state. I am not ready to lose
my mother because she cannot afford the medications that she needs in order to
stay alive.

This woman, my mother, she is the woman that met a
woman at the drugstore one cold afternoon in Chicago. Somehow the two of them
began to talk, my mother in her fur coat, and the woman in her near rag
clothing. They shared stories and they exchanged numbers. My mother came home
and said that we were loading up the car and going to a friend’s house. We did
not know where we were going. When we arrived, there was a tree strapped to the
top of the car, a box of decorations and trunk full of presents. Apparently,
her new friend had fallen upon hard times and were being evicted from their
home, had no money or food to feed their 5 orphan children. My mother promptly went
to the Christmas tree lot, bought a tree, decorations and then proceeded to the
store to buy gifts for all of the children, clothes and food for the mom, and a
box of toys from Santa. We spent the evening turning their dismal home into a
joyous celebration with decorations, music, laughter, hot chocolate and love.

That woman, the one that stopped her entire life on
Christmas Eve to make another family feel less pain, even if only for a moment,
that woman is my mother. That woman is the woman being denied health care,
medications, money and all of the necessities to keep her alive. I am not ready
to lose my mother because there are no systems to help her. I am not ready to
lose her at all.

How I ask you, how, just how is this even possible?
How is it that we live in world with a woman like my mother and in a world where
there is no help for that very woman, my mother. I am not ready to lost my mother to a failing system, I am not ready to lose my mother at all.